The Academy has set sail to be the first entity to collect, store and analyze health data on all U.S. children. The board agreed to commit $583,000 in resources from the Tomorrow’s Children Endowment to begin development of a child health clinical data registry, which is expected to unfold over five years. This unprecedented initiative, called Clinical Health Information and Longitudinal Data Registry (CHILD), is the outgrowth of two strategic plan objectives:

Use data and metrics to develop and priori­tize areas of need for child health policies.

Provide state-of-the-art pediatric practice information in the context of a changing industry and professional landscape.

Data would be captured through electronic health records, integrated health care systems, payers and existing pediatric disease registries. Data elements would include well-child and sick visits, chronic disease diagnosis and management, specialty care, and developmental and behavioral care. The registry also would include a patient portal to allow parents and patients to input data, while alleviating complications surrounding privacy laws.

Christoph U. Lehmann, M.D., FAAP, medical director of the AAP Child Health Informatics Center, and professor of pediatrics and biomedical informatics, Department of Medicine, Vanderbilt University School of Medicine, presented project details to the board, including the following primary goals:

Create substantial improvements in child health and well-being.

Accelerate advances in child health.

Improve outcomes for children using data.

Demonstrate the trajectory of child health through adulthood.

Among the benefits of this registry, Dr. Lehmann said, are tracking childhood health and illness trends, which would help draw conclusions on a number of areas, including gaps in care, treatment options and regional variations in care. The data also will help inform the creation of AAP guidelines and policies, and provide guidance to payers.

Members could use the data to help create reports for quality improvement projects, as well as for meaningful use and Maintenance of Certification, Dr. Lehmann said.

Emphasizing data privacy and security, he said pediatricians will own their data and give permission for data to be distributed and reported. Protected health information will be stored separately from clinical data. Access to data will be tiered based on permission level.

A work group will be established to provide clinical direction for registry development, assist in the development of a sound business plan and define the purpose of the registry.